BLINDNESS-WHAT IT MEANS IN THE MIND OF A BLIND CHILD

by Ramona Walhof

Editor's Note: The following article is an edited and expanded
version of a speech given at the Parents Seminar at the 1995
NFB convention.

Perhaps you have heard the story about Johnny, who came
running in from play to ask, "Mommy, Mommy, where did I come
from?" Mommy thought four years old was a little young to be
asking about the birds and the bees, but she supposed she was
up to it. She explained about growing for nine months in the
uterus inside her tummy and then being born. Johnny was
impatient to go back outside, but on the way he called over
his shoulder, "I came from a uterus, but Michael came from
California."

We cannot read our children's minds. If we could, there
would be many surprises. This is true of blindness, just as it
is regarding other things. But there are some general things
we do know.

A child who is born blind does not know what it is like
to see. Until he or she is old enough to begin to understand
how other people do things, blindness seems normal. Therefore,
a small child will not feel bad about blindness until someone
teaches him or her (directly or indirectly) to feel bad.

When my sighted children were little, they treated me in
some ways that were different. If they showed me something,
they put my hand on it. I did not teach them to do this; it
was obvious. They knew what worked, but that didn't mean they
understood blindness-they didn't, not at that age, anyway. A
blind child is the same. They learn what works, and they do
it. But that doesn't mean they understand what blindness is
and isn't.

Blindness is something we explain little by little as a
child progresses toward school. Because nobody knows when a
blind child really understands what blindness is, it should be
discussed in a positive manner. Anything associated with
blindness should also be approached positively. Learning to
use a white cane or being able to read Braille can be an
opportunity and a privilege, not a last resort. Braille is a
special way to read with your fingers. These positive
approaches convey the attitude, "It's okay to be blind."

We must not lament the fact that a child cannot see. It
isn't helpful to make comments such as: "I wish you could see
the birds out the window," Or "I wish you could see the
pictures in this book." But we can say, "Do you hear the birds
singing? They sound nice. They have pretty colored feathers
which look nice, too." or "This is a funny picture. It shows
an elephant in a dress! Isn't that silly? Do you remember the
elephant you rode on at the zoo? Can you imagine it in a
dress!"

In other words we must share what we see with a blind
child as a pleasant and normal part of communicating, not as
a constant sad reminder of something a child is lacking. It is
impossible to guard blind children from all excessive
admiring, crying, and gushing about blindness, but parents can
begin by setting an example. This means getting your own grief
and frustration about blindness out of your system as early as
possible. You have a good peer support group right here to
help you through that.

I recommend you don't spend a lot of time talking about
how much your child can see. Neighbors, other family members,
friends, and even strangers will want to do that. They are
curious and being friendly when they say to your child: How
much can you see? Can you count my fingers? Can you see that
color? Can you see across the street? Sometimes the child
tries to cooperate, and sometimes he doesn't. Either way too
much talk about what he can see will be boring and confusing
to him. Why does it matter so much? Is the amount a child can
see really the most interesting and important part of him? Of
course the doctor must do eye tests, and as a parent you want
to have some idea of what your child can use vision to do, but
this is enough.

Blind people can tell you about the different reactions
they had as children to all this discussion about seeing. I
learned to lie about it. I tried to make people happy so they
would leave me alone and I could go on to other things.
Pretending sometimes got me special privileges and prestige at
the school for the blind; and I knew I made my family members
happy if I said I could see things. Nobody meant to teach me
to lie, but they did.

And what about using the word, "blind?" Does it make you
uncomfortable? It might be hard for you, but it could be a
relief for your child to be able to name the difference he
senses, but no one will talk about. I can remember feeling
that something was wrong with me before anyone used the word
blind. When I was in kindergarten in public school, the
teacher guided my hand to teach me to print. I couldn't see
the large letters she put on the paper. I learned to print,
but the whole thing was embarrassing and confusing to me. Some
explanation about what was happening might have been helpful,
although I know that the adults involved were as unsure about
what to do as I was.

An even bigger concern for me in kindergarten, though,
was the bathroom. From the kindergarten room you had to go
across a big hallway, down a flight of stairs, around a few
corners, and there was the bathroom right next to the door
that led to the playground. My class always went to the
bathroom just before recess, and I found it very hard to wait.
It was all right to go earlier, and I know that other children
did, but I was sure I could not see well enough to find my
way. I did not dare admit this to anyone. One day when the
teacher asked me why my dress was wet, I told her I didn't
know. I did not associate this problem with blindness, but I
now do. I am not aware that the teacher or my mother ever
figured it out.

Your child needs reassurance that blindness is okay even
before he or she really understands what blindness is. This is
true because of what others say about it, and because a blind
youngster may have fears (as I did) that are associated with
their lack of vision.
If you have created an atmosphere where it's okay to talk
about blindness, your child will have the language, and the
"permission" he needs to express some of the things he or she
is thinking or experiencing about it.

When a blind child is little he or she may not have much
interest in what you see. You may drive along the road and
describe beautiful scenery, and your child may totally ignore
you. Because children express no interest, that doesn't mean
you should quit talking about what you see. But do it in small
doses. You know that you get information from all directions
through your eyes, both close up and far away. Your child
doesn't know what you see. Gradually, he or she will learn-if
you keep talking. It is important that a blind child learn how
to interact with people who are getting information visually.
In one sense your child may borrow your eyes to read a story,
learn about colors, identify a noise, and so forth.

Sight is convenient and blind people rely on sighted
people for certain things. This is not bad, but good and
proper. Blind children need to learn how eyesight works and
how to interact with sighted people. It's a part of learning
about blindness. But, too much reliance upon someone else's
sight deprives the child of skill and confidence. Thus, a
blind child must learn how to balance trusting their blind
techniques and understanding the uses of vision. It is part of
growing up for a blind child. It is not a disaster if we don't
understand it all immediately.

Several parents have mentioned to me lately that their
blind children seem to have trouble understanding humor. I
would not hesitate to describe some humor to your children,
but I wouldn't worry if they miss some jokes. It's good to
describe some cartoons so that your child comes to understand
that humor is often based on weird impressions shown in
pictures. My mother used to read the comic papers to me, and
I am sure this was helpful, but I was often slow to understand
jokes.

Blind children must learn to get information from sighted
people for many different purposes. This is part of a
life-long process.

We keep learning about eyesight, just as we keep learning
about many things. When I was 40 or so I was driving down the
street with my two sighted teen-agers, and I wanted to get
some information about street signs. I said, "I want you to
read to me every sign you see." That was a mistake.

They thought this was a wonderful opportunity. They
couldn't talk fast enough to read all the signs out loud. They
were deliberately taking advantage of the situation to read
things they knew I didn't want to know (not an unusual
attitude for a teen-ager), but I learned something new from
this experience. I knew that in a business district there are
signs on practically every building, but I really had no
concept of how many signs you could read while driving down
one street. I tell you this just to show how a blind person
continues to learn about seeing. The process needs to start
young. Your awareness of this process will help you help your
child build a better grasp of how vision is used.

When my son was three years old he taught me something I
found instructive. He was a sighted child. I already knew how
blind children learn about color for I was a blind child and
grew up with other blind children. We learned by listening to
what people said about color. As we grew older, we learned to
do things with color based on what others were doing and
saying. What I didn't know is that this is the very same way
sighted children learn about color, too. My son had a pair of
comfortable, striped, knit pants, and he had a nice
comfortable T-shirt that was absolutely the wrong color to
wear with those pants! In typical three-year-old style, he
wanted to wear them together. He liked them, so they must look
good together. I had to teach him that other people said they
didn't look good together. We had similar experiences when
matching other things he liked, too.

This is the same lesson you teach a blind child. A
sighted child sees the colors and a blind child doesn't. But
both must learn what the culture agrees is okay in using
colors. Think about it.

You have heard statistics about how much learning is
visual. These are often used to indicate that blind children
don't learn as much or as fast as other children. This is not
necessarily so, unless we don't use the alternative techniques
that are available to the blind.

If a blind infant drops a set of keys on the floor, and
you lean down to pick them up, that can be a fun game. If you
lower the baby down and put his or her hand on the keys, it
might be even more fun. If you encourage the little one to
move his hand back and forth on the floor to find the keys,
that's another kind of game, and that's learning. As the baby
becomes a toddler, a little talk about where things go when
they get thrown and dropped increases learning gradually.
Sometimes the child will cooperate and enjoy the games, and
sometimes not. But you keep playing them and making them more
challenging and complex as he learns.

My friend, Ali was three years old when she first came to
my house. She is blind and has mild cerebral palsy, so is slow
to walk. However, she covers a lot of ground in her crawling.
Within minutes after arriving at my house Ali was sitting in
front of the refrigerator in the middle of a crowd of people
in the kitchen and was in danger of being stepped on. Her
father rescued her and explained that Ali often heads for the
fridge in new houses. She must find that big metal box with a
motor humming and air blowing out very interesting.

Later I learned from Ali's mother that she also likes to
get things out of the fridge (if she can reach them) when the
door is open. I have no idea when Ali made the connection
between the fan in the fridge and the food, but I know she
did, and that's learning. It may not be exactly the same
pattern that another child would follow, but that doesn't
matter. Ali learned about the fridge, and that's what is
important.

We reduce blindness to the level of a nuisance by using
our own imaginations to figure out what techniques are best
suited to specific experiences. Just because you never saw
someone who is blind doing a thing doesn't mean it can't be
done.

It can be helpful, as you raise a blind child, to observe
how sighted children learn. Here is an example.

When I was visiting my daughter's Sunday school class of
three-year-olds, one little boy, Thomas, arrived early. My
daughter gave him colors to keep him busy until she and the
other children were ready for class. After coloring for a
while, Thomas reached for the scotch tape which was nearby. It
was clear to me that he did not know how to get the end loose
from the dispenser, so I showed him how to do it.

If Thomas had been blind, he might not have noticed the
tape an arm's reach away-I would have had to tell him it was
there, or prompt him to explore until he found it. Also, I
would have used different techniques to show him what to do
with it. But using tape should be as normal and typical for
the blind three-year-old as it is for the sighted
three-year-old. If we watch a sighted child doing something
like this, it prods us to offer the same opportunity to our
blind child. It is a simple matter to say, "Oh, look at this.
What do you suppose we can do with it? Here, let me show you."
So what if the child makes a big mess with the tape? That's
the way kids learn.

Paying attention to children in general can help us be on
our toes in offering new learning experiences to blind
children. It is really just as simple as that-not anything to
worry about, just a guide which can be useful.

Like other children, blind children need to learn about
appropriate and inappropriate behavior. This gets a little
complicated sometimes because blind children should do some
things differently. For example, it is okay for a blind baby
to feel your face, and they often do. But this becomes
socially unacceptable at a very young age. Before school age
a blind child needs to learn that it is not a good idea to put
their hands all over other people. It is better for a young
boy to be slapped and learn a lesson about getting along with
his peers than be branded "to be avoided" by his classmates.
Unfortunately, most young girls would not slap the "blind
boy." This means parents have an extra responsibility in
teaching social skills to their blind youngsters. They need
information even when they don't ask for it and don't take it.
We must keep reminding them when we see inappropriate
behavior.

When my children were small, I grew very tired of having
to fuss at them for doing the same thing over and over. I
tried to be creative in finding ways not to nag. This spring
my youngest graduated from college, a real milestone for both
of us. He is selling books this summer as he has done
throughout college. He said to me "Don't let me stay with the
company beyond the summer." Amazed, I asked what he wanted me
to do about it if he did. "Nag me" he answered. I told him I
didn't like to nag, and I thought he didn't like it either.
What do you suppose he said? "Sometimes it works." Well, I
found that most interesting and pass it on for what it is
worth.

Many blind children feel no need to hold their heads
erect. Not only does this look funny, it also causes
underdevelopment of the muscles in the neck and back. Constant
reminders and creative motivators must be tried. There is no
simple solution, but it's worth working on. When they get to
be 16 or 20 they will be very glad if they've developed the
practice of holding their heads up and looking at other
people.

One evening I was talking with a blind eight-year-old who
was jumping up and down and flopping his body around. Thinking
I could subtly change this behavior, I suggested we sit down.
We did and continued our conversation, and he continued to
jump around. By and by I mentioned that most eight-year-olds
don't jump around all the time. "Oh," he said, "I do that all
the time."

"Yes," I said, "that's why I brought it up. It makes you
look funny."

I still did not get much response, but repetition of the
same message in different ways will get through. Sometimes we
just have to figure out how to make the message matter, and
there may be some value in using a blend of shock techniques
and repetition. It reminds me of a story I once heard about an
old man named Pat. The priest wanted Pat to support the
building of a new church, but Pat was resisting. Pat said, "I
give my dime every Sunday, and that's all you're going to get
out of me." Just then a big piece of plaster fell and hit Pat
on the head. This changed his mind. After Pat offered a large
sum, Father said, "Pat, let us pray." They knelt in front of
the altar, and Father prayed, "Heavenly Father, hit him
again." I cannot provide a big piece of plaster when you need
it, but there are times when you can be too gentle. No
technique is right for every situation, and frequently a
change of emphasis from day-to-day is desirable.

Today most blind children have far less contact with one
another than when most of us were young and went to schools
for the blind or resource classrooms. Being one blind person
among hundreds of sighted children in public schools and in
the neighborhood can be lonely. There is a void in learning
about blindness. In fact children learn, to their detriment,
to take advantage of other people's attitudes about blindness.
Public attitudes about blindness may be the most difficult
part of raising a blind child, both for you and your child.
Some of you may know better examples than I do, but let me
share just one.

Nine-year-old Melissa lived in a house about 200 yards
from the road where the school bus picked her up. There was a
dry creek bed with a bridge across it between her door and
where she caught the school bus. Melissa was still learning
when to use her cane and when not to. She resisted taking it
when she should. Her mother explained to her what could happen
if she didn't use her cane, but Melissa continued to resist
taking it when she should. Sure enough, one morning Melissa
went racing out the door to catch the bus-without her cane-and
fell in the creek bed. Melissa was not seriously hurt, but the
neighbors were angry. They felt mom should not let Melissa out
of her sight. They didn't think Melissa could be safe even
with the cane. Even though mom had the right attitude, it was
difficult to stand her ground when all the neighbors were mad
at her. I reassured mom that she was right on target.
Sometimes it is hard not to fall into traps formed by public
attitudes.

Without realizing what they are doing, blind children
often learn to depend on sighted people more than they need to
or should. Elementary school is not too soon for a blind child
to begin traveling independently, keeping track of print
papers, looking for things that are lost or dropped, keeping
track of clothes that match, etc. As a child matures, he or
she needs to develop more self-reliance in all these areas.

This spring Kathryn was a model in a fashion show. She
had less time than I wished to practice her route across the
stage, down the steps, around a couple of corners, and down
the aisle through the audience. Still she did just fine and
looked good. As she came down the steps someone could not
resist the need to tell her where she should go. A lipreader
at a nearby table reports that Kathryn said in a whisper
without looking around, "I can do it myself." Kathryn handled
the situation, but it must have been demoralizing and
embarrassing.

Still, how many times in a day or a week do children like
Kathryn have to face somebody who does not really believe in
them? What does it do to their confidence? Their self-esteem?
We cannot quickly change these attitudes but what we have to
offer is valuable. We can reassure blind children that
somebody does understand. We can offer the opportunity to talk
about blindness and to learn the skills that help to reduce it
to the level of a nuisance. We can share with these children
the successes, frustrations, grief, and excitement of growing
up as a blind person. Blindness is a characteristic these
children do not share with most of their peers. To talk about
it when they can is important, and we must find a way to give
them this opportunity.

A child needs to be encouraged to understand how he or
she is affected by blindness. I have been asked many questions
by blind youngsters which demonstrate they want to talk about
it. They ask me: When should I use my cane, and when should I
walk with someone else? How do I decide when I really need
Braille? If a lot of other people seem to know what is going
on and I don't, what can I do about it? In a group I don't
always like to ask for help or information, but if I am quiet,
often I get left out or forgotten, and I don't like that
either. I know I can be noticed by calling attention to
blindness, but sometimes that isn't much fun. What will my
life be like when I grow up? All the adults I know can see.
How will I learn to put make-up on? What will happen if I
don't drive a car?

Whether you hear these questions in so many words or not,
you need to realize that blind children are thinking about
these things. Both you and your children need to talk about
matters like these and work out answers. One of the resources
available to you through the National Federation of the Blind
(NFB) comes in the form of people who have answers to these
questions.

The other day I visited a one-week camp for blind
children who attend public school in Idaho. I was introduced
to a group of about ten teen-agers. Most had returned to the
camp for at least the second year. After telling them who I
was, I asked why they liked the camp and came back. No
answers. I told them I thought I knew. It gives them an
opportunity to share experiences with others who are blind.
Immediately, the room was abuzz with chatter and questions.

My few minutes grew into a whole class period. These
youngsters wanted to talk about jobs; careers;
discrimination-what it is and what to do about it; attitudes
of parents, teachers, and peers about blindness; and all the
topics we have touched on this morning. At that camp there
were counselors who would discuss blindness in the evenings,
but they were not themselves blind. It seems to make a
difference. I don't have all the answers to their questions,
but that did not seem to matter. They were eager to share with
me and to have my thoughts to ponder.

The NFB Training Centers in Louisiana, Colorado, and
Minnesota sponsor summer programs for blind children. Their
staff members-most of whom are blind like me-will tell you the
same thing. Children are eager to learn about blindness from
those they know have had real experiences. They are glad for
the opportunity to experiment with the skills and attitudes
about blindness that they are learning.

Kathryn is ten years old, and I have known her for five
or six years. When I see her, Kathryn always wants to take
hold of my cane. At first she wanted to talk about it and
compare its size to her own. Now she just wants to grasp it
for a moment and go on with whatever she is doing and saying.
I think this is her way of saying, "I'm glad you and I have
canes in common."

The National Federation of the Blind provides the rhythm
and the melody for us all to march forward together to change
public attitudes about blindness. We have a young, energetic
leader who depends on all of us to make the music and move
ahead. Our children are learning to play the instruments that
broadcast our message to the world.

One or a few persons cannot make the band move forward or
sound good. The fullness of sound and the impressiveness of
configurations on the field come from planning and rehearsals.
Each individual must play a part and coordinate with the
others. Because of our togetherness, we are all more
successful than any could be alone.

We meet at this convention to renew our spirits and
improve our skills and our understanding. As adults, both
blind and sighted, we need what we came here to partake of.
And we bring our children, for they need it, too. They need
what they will find this week, and they depend on us
throughout the year to improve their skills and grow in their
understanding.

When our children become the section leaders, one day our
band will be welcomed by society as a leading part of the
parade, not merely with sympathy because the blind are doing
better than expected, but with honor because the high quality
of our performance can no longer be denied.

This is what we hope and plan for our children, and this
is what they dream. We must do what we can to facilitate their
dreams. We are, and we will continue to do so. This is our
goal today for ourselves, and this is our pledge to the next
generation!